Bio-behavioural research in a rare disease population: a doctoral student's experience.

BACKGROUND: Novice researchers who aspire to contribute to the body of knowledge concerning rare diseases face unique challenges in developing and conducting studies. These include unknown effect sizes in previous research, limitations in recruitment and enrolment, and managing data from a multi-site sample. AIM: To describe the challenges in researching rare diseases and possible solutions using a doctoral student exemplar from a cross-sectional correlational study of fatigue. DISCUSSION: The authors discuss the lessons learned from the study, including the challenges in recruitment, communication, collecting biological data and managing data in general. They posit possible solutions, including improving multi-site coordination, feasible methods for exploring sleep and stress, and measures to prevent equipment and data loss. CONCLUSION: Rare populations, such as young survivors of childhood brain tumours, deserve a voice in building the body of knowledge needed for more precise, personalised healthcare. It is possible with foresight for the novice researcher to make such a contribution. IMPLICATIONS FOR PRACTICE: Improved knowledge and assessment of symptoms during childhood will improve the detection of health risk factors and enable earlier intervention.

Recruitment of hard to contact, hard to engage child populations in clinics and schools.

Recruiting children with chronic disease or subgroups of children (low income, obese, specific ages, types of cancer) from clinics and schools for research studies may be particularly difficult. While some have deemed such groups as hard to reach, these groups may be more accurately described as either hard to contact or hard to engage. This is not because children are unknown to the school or clinic but because the researcher's ability to communicate directly with targeted children prior to enrollment is limited. The purpose of this paper is to describe barriers and possible strategies for recruiting hard to contact or hard to engage subgroups of children. Barriers identified in recruiting these children were: naïve to research, communication style and technology, parent/guardian burden, parental conditions and concerns, child stressors and distractions, and research setting. Possible strategies include: pre-consent education, information sheets about study, identifying preferred method of communication, meaningful and appropriate incentives, coordinating recruitment visit with regularly scheduled clinic appointments or school schedule, demonstrating research equipment, informing staff about research study, negotiating creatively for space for research, and emphasizing confidentiality of data. Consideration of barriers to recruitment and utilization of strategies to counteract these barriers is critical to the success of a study involving subgroups of children.

Perceived Stress and the Fatigue Symptom Cluster in Childhood Brain Tumor Survivors.

OBJECTIVES: To explore and estimate relationships among the elements of the symptom cluster in survivors of brain tumors aged 8-12 years during early survivorship. SAMPLE & SETTING: Child participants completed treatment at least six months and less than six years prior to enrollment at Children's Hospital of Alabama in Birmingham or Cook Children's Medical Center in Fort Worth, Texas. METHODS & VARIABLES: With cross-sectional methods, the authors measured child-perceived stress, sleep-wake disturbance (SWD) (parent report), and fatigue. Children also provided saliva samples for cortisol measurement (stress response) and completed actigraphy sleep monitoring. RESULTS: Mild to moderate stress, SWD, and fatigue were reported, and a wide range of sleep times and cortisol levels were noted. Meaningful effect sizes in relationships between variables were found. IMPLICATIONS FOR NURSING: The stress, SWD, and fatigue symptom cluster in survivorship necessitates routine nursing assessment.

Post-Deepwater Horizon Oil Spill Exposure Patterns Among Children in Mobile County, Alabama.

OBJECTIVE: The aim of this study was to characterize environmental exposure from Deepwater Horizon oil spill among pre-K to fourth-grade children from six schools in Mobile County, Alabama. METHODS: A mail-in survey administered 11 months post-oil spill to children's parents/caregivers elicited information on exposure-related activities. Descriptive and multivariable analyses were performed. RESULTS: Overall, 180 children (coastal schools, 90; inland schools, 90) completed the survey. During the post-oil spill period, children in coastal schools were less likely to reduce their exposure-related activities, including fishing; eating and selling caught fish; visiting beaches; and parental participation in cleanup activities, than children in inland schools. Particularly, fishing and eating caught fish were significantly associated with the coastal group (odds ratio = 2.28; 95% confidence interval = 1.54 to 3.36). CONCLUSION: Proximity to the shoreline may serve as an indicator for potential exposure in oil spills among vulnerable populations including children.

The Roles of Formaldehyde Exposure and Oxidative Stress in Fetal Growth in the Second Trimester.

OBJECTIVE: To examine the relationship between formaldehyde exposure and fetal growth in the second trimester and the potential mediating role of oxidative stress in this relationship. DESIGN: A cross-sectional study was conducted. SETTING: The participants were recruited from one university-related clinic and two private obstetrics and gynecology offices in the Southeastern United States. PARTICIPANTS: A convenience sample of 140 healthy pregnant women in the second trimester of pregnancy was enrolled from November 2013 through June 2014. METHODS: Formaldehyde exposure was measured via vapor monitors worn by the participants for 24 hours. One-time urine samples were collected during a routine prenatal visit to measure the level of 15-isoprostane F2t and cotinine as biomarkers of oxidative stress and tobacco smoking, respectively. Urine creatinine was measured to standardize the cotinine and 15-isoprostane F2t levels. RESULTS: Eighty-eight participants (63%) returned their formaldehyde monitors. The linear regression model showed that the dichotomized level of formaldehyde exposure (<0.03 and >0.03 ppm) was a significant predictor of biparietal diameter percentile after controlling for maternal race (p < .006). The relationship between 15-isoprostane F2t and fetal growth was nonsignificant, and the mediating role of oxidative stress in the relationship between formaldehyde exposure and biparietal diameter was not confirmed. CONCLUSION: A relationship was found between formaldehyde exposure and biparietal diameter in the second trimester. Although further research is necessary to confirm the results of this study, nurses may consider advising pregnant women to limit their exposure to formaldehyde during pregnancy.

Formaldehyde exposure during pregnancy.

BACKGROUND: Pregnancy is a particularly vulnerable time for exposure to indoor air pollutants, such as formaldehyde (FA), which is linked to spontaneous abortion, congenital malformations, and premature birth. PURPOSE: To determine personal exposure to FA during pregnancy, and to identify the relationship between FA exposure levels and potential residential sources of FA. STUDY DESIGN AND METHODS: The study sample consisted of 140 pregnant women recruited from obstetrical clinics in Huntsville, Alabama. Formaldehyde exposure was measured by FA vapor monitor badges. Questionnaires were administered to participants to identify potential residential sources of FA. Urine cotinine, a surrogate for tobacco smoke exposure, was also used as an indicator of a possible source of residential exposure to FA. RESULTS: The mean level of FA exposure by vapor monitor badge was 0.04 parts per million (ppm) (SD = 0.06; range 0.003-0.54 ppm). Minimum risk levels of 0.03 and higher were found in 36.4% of participants. Exposure levels of FA were higher in spring than winter (p < 0.001). Exposure levels of FA were correlated with indoor temperature of dwellings (p < 0.02), installation of new carpet within last 5 years (p < 0.04), and use of nail polish (p < 0.01). No relationship was found between FA exposure and urine cotinine levels. CLINICAL IMPLICATIONS: Formaldehyde exposure may increase at various times in the lives of women; however, it is of particular concern during pregnancy because of perinatal risk to the exposed fetus.

Tobacco exposure, weight status, and elevated blood pressure in adolescents.

The pathogenesis of hypertension begins in youth. An estimated 4% of US adolescents have diagnosed hypertension and 17% have elevated blood pressures, predisposing them to hypertension and cardiovascular disease (CVD) later in life. There is limited research on the clustering of CVD risk factors such as tobacco exposure and weight status that may be associated with high blood pressure in adolescents. The aim of this exploratory study was to determine the relationships between total smoke exposure (TSE; cigarette smoking and secondhand smoke), waist circumference, and blood pressure in a sample of rural adolescents, ages 15-18. A convenience sample of 148 adolescents ages 15-18 was recruited from two rural high schools (88 female and 60 male, all Caucasian). Adolescents were assessed for tobacco exposure (self-report, salivary cotinine), weight status (body mass index, waist circumference), and blood pressure. Self-report measures of tobacco exposure included the Uptake Continuum and Peer and Family Smoking measure. Age, gender, waist circumference and salivary cotinine contributed to 35% of the variance in systolic blood pressure and 18% in diastolic blood pressure. One-fourth (25%) of adolescent males and 11% of adolescent females had elevated systolic blood pressures. Approximately one-fifth of the sample (22%) had elevated salivary cotinine levels indicative of tobacco use and secondhand smoke exposure. TSE and waist circumference were predictors of elevated blood pressure in adolescents. Public health measures need to address clusters of risk factors including blood pressure, tobacco exposure, and weight status among adolescents in order to reduce CVD.

Sleep quality, stress, caregiver burden, and quality of life in maternal caregivers of young children with bronchopulmonary dysplasia.

Little is known about the influence of sleep quality, stress, and caregiver burden on quality of life in maternal caregivers of young children with bronchopulmonary dysplasia (BPD). In 61 maternal caregivers (mean age 29.59 years) of young children with BPD (mean age 13.93 months), caregivers reported sleeping a mean of 5.8 hours, and significant correlations were found between sleep quality and depressive symptoms and stress, as well as an inverse correlation with quality of life. Sleep quality was found to be the most significant predictor of quality of life in maternal caregivers.

Stress and inflammation: a biobehavioral approach for nursing research.

Despite known advantages, the use of biobehavioral approaches in nursing research remains limited. The purposes of this article are to (1) present applications of stress and inflammation in various health conditions as examples of biobehavioral concepts and (2) stimulate similar applications of biobehavioral concepts in future nursing research. Under a biobehavioral conceptual framework, studies on stress and selective inflammatory biomarkers in cardiovascular, cancer, and pulmonary health are reviewed and summarized. Inflammation underlies many diseases, and stress is a significant source of increased inflammation. Biobehavioral concepts of stress and inflammation are highly relevant to nursing research concerned with health-related issues. Diverse biobehavioral concepts are readily applicable and should be utilized in nursing research with children and adults. To stimulate further biobehavioral research, more training and resources for nurse scientists, more unified conceptual definitions and biobehavioral conceptual frameworks, rigorous and expanded methodologies, and more collaboration are essential.

Allergens in school settings: results of environmental assessments in 3 city school systems.

Environmental allergens are major triggers for pediatric asthma. While children's greatest exposure to indoor allergens is in the home, other public places where children spend a large amount of time, such as school and day care centers, may also be sources of significant allergen encounters. The purpose of this article is to describe schoolroom allergen levels from 3 different geographic sites obtained from dust samples collected in the fall and in spring. Environmental dust samples were collected from elementary schools in Birmingham (AL), Detroit (MI), and Houston (TX), from 4 room locations, including the cafeteria, library, upper grades, and lower grades. Samples were assayed for dust mite (Dermatophagoides pteronyssinus and Dermatophagoides farinae), cat (Felis domesticus), and cockroach (Blatella germanica 2) allergen levels. Allergen levels varied by geographic location and type of schoolroom. Schoolroom settings differed by the type of flooring (hard and carpet), room characteristics and use (food service, library shelves with books, and general classroom with multiple types of materials [individual desks and different types of furniture]), and the average age of the schoolroom dwellers (younger vs. older children). Dust mite, cat, and cockroach allergens were present in all schoolrooms and all sites at varying levels by season and by type of room. Schools may be important sources of direct allergen exposure and reservoirs that could potentially contribute to allergic sensitization and disease exacerbation in children. Further studies are needed to carefully examine the environmental allergen load in schools and its effect on children.

A multi-stage asthma screening procedure for elementary school children.

This paper describes an asthma screening procedure developed to identify children with asthma for an intervention study. Students were classified into three categories based on questionnaire responses (previous asthma, suspected asthma, and no evidence of asthma). Those classified as suspected asthma by questionnaire underwent further testing, including spirometry and exercise challenge. Using the questionnaire alone, the measured asthma prevalence was 32%; the addition of spirometry and step testing reduced this estimate to 9.89%. The diagnosis of asthma was confirmed in 96% of children who saw the study physician. This screening procedure can identify school children with suspected undiagnosed asthma.